One Midwestern family story of kids, school and crazy world of pediatric cancer.

Thursday, September 18, 2008

Gathering Strength

Kevin was released today from the B.M.T. unit around 3:30 We went back to the Target House and relaxed and played with his Spider Man wax figure machine. He had fun with this, while showing obvious comfort not being hooked up to his big hospital medicine pole. He has redi-meds and T.P.N for nourishment that still gets hooked up through his line. However, his TPN has a backpack and the redi-meds are 30 and 60 minutes, so for the most part he's free. His TPN is administered over 12 hours so we schedule it so he's hooked up while he's sleeping for the most part. There was a pasta dinner at the dining area at the Target House toinight. This is always nice, as we get into our hospital schedules (especially when he's inpatient) time doesn't allow us to see our St. Jude friends much. I knew Kevin wouldn't be able to eat at the dinner, but I was hopeful he could manage some soda and maybe a cookie. He had a sip of soda, smelled the aroma of the pasta and garlic bread (this is before I even made a plate) and was sick within 5 minutes. He didn't make it out of our booth. Anywhere else this would be a little embarassing and Kevin would be really self conscious---not here. This is a common occurence, and staff members were on top of it immediately. I took Kevin to the bathroom to clean up, and we went up stairs to our room until Rachel and her Aunt Lannie arrived (with Jake of course). Rachel was kind enough to bring me up a plate as well, and we all had a nice pasta dinner in our apt. Rachel and Kevin spent some quality time watching a movie, while I visited some friends downstairs. Apparently Jake became pretty moody, so Lannie walked him around downstairs and found me playing pool. Jake loved watching me play, and was appeased for a good run of 4 or 5 games. It was really nice having Lannie here to help out. I think she really enjoyed spending time with Kevin and Jake. She has a really good heart. One of my good friends at St. Jude, Ali gave me some wonderful news about his daughter Aline. She has a fairly similiar type of brain tumor that Kevin has, although it's called a PNET, since it's in middle/front part of her brain. When initially diagnosed she was found to not only have it in an inoperable area, but MRI's also show that it metastisized up and down her spine. This put her in the high risk protocol. Radiation and chemo has managed to shrink her tumor from 6 X 4 cm to less then 1 x1 in her brain. And the spine is clear except for a tiny spot at the very bottom. I've become pretty close with Ali and was so incredibly happy to hear his news as he shared the recent MRI results with me this evening. The doctors expressed that they were very pleased and have told him her prognosis has gone from not so great to quite promising. I know 99% of the readers don't know them, but a few have met her and I'm sure will share my joy. She's always full of smiles, and bats her little 4 year old eye lashes at you when you address her. Unfortunately there are some sad accounts at St. Jude, but there are many good one's as well. Also our friend Heather (according to her blog) continues to gain strength and make great strides in her transition home. We're very proud of her!! Kevin was very talkative when I put him to bed tonight and lay next to him. We had a nice private talk that was motivated 100% on his end, and it was very positive. He believes in his heart and soul that he's beat this. I choose to believe him unless told other wise, and will not tempor his optimism. He talked one by one of his friends back home, and his memories and anticipation of further good times. I leave tomorrow and am already a little sad to not be with him. But I have a pile of bills and work to take care of back home. It's getting late, and we have an 8:30 labs appt tomorrow morning.

3 comments:

I am so glad Kevin is so confident. I think they are very smart. I know it will be hard for you to leave but Kevin should be right behind you. How nice will that be to be home. I remember like it was yesterday talking to you in the eating area of RMH at the start of all tihs. Look at us now. You go KEVIN.

That is great to hear about Ali and Aileen. Please tell him if you see him how happy I am to hear that. He and Dana are so nice. Do they have a caringbridge? It is always so nice to hear such success stories.

Have a safe trip home. We will continue to follow ya'll. Thank you for all your prayers and praises for Heather. She is getting better every day. She is talking so much I can not get a word in edge wise. It is so nice to see her coming back. The farther out of chemo the better they look and feel. Kevin is not far behind Heather. We have two wonderful and strong children. I am sure we have all learned more than we even realize from them . They are my heroes.

I am so excited to hear of his optimism!!! This positive outlook does so much more for healing than we can ever understand. You all have made it so far. I can only imagine how scary and uncertain each new turn may be...but these next ones are so exciting. He's doing it..he's fighting...you all are. It's amazing to me everytime I read the blog..everytime I talk to you or Kev or Rachel...just how much your all fighting and pulling together through this..it's very admirable. I can't wait to have you guys home.I love what your friend Kathy wrote..it's Kevin's time to heal.Laura